Managing Caregiver Burden

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					Managing Caregiver
• In what ways can the carer role be
  view other than as a burden?
• List the ways in which carers can
  be helped
• List the ways in which an Alzheimer
  association can provide help for
          My credentials
• Old Age Psychiatrist for over 25 years
• Took part in social research relevant to
  care of people with dementia at home
• Chairman of the Alzheimer’s Society,
  England 1987-1994
• Chairman of Alzheimer’s Disease
  International 1996-2002
• Experiences gained from carers around
  the world
       Definition of
caregiver / carer / caretaker

"A family member (or friend) helping
someone on a regular ( usually daily)
basis with tasks necessary for
independent living.”
               Zarit and Edwards (1996)
      Characteristics of carers
• Spouse, partner, child, professional
• Living with / at a distance
• Unpaid / paid; formal or informal
    (Barer and Johnson, 1990)
•   Routine, regular, occasional
•   Women – 75%
•   Daughters, daughters-in-law
•   Extended family network – changes
       Effects of caregiving1
•   Psychological
•   Physical
•   Social
•   Financial
•   1BrodatyH, Green A. Family caregivers for people with
    dementia: Carer burden and stress, in O’Brien J,
    Ames D, Burns A (eds), Dementia. 2nd Edition.
    Chapman & Hall, London, (2000).
     Psychological effects (1)
•   Sense of love
•   Bonds of a life - time together
•   Spiritually fulfilling
•   Sense of duty
•   Social pressure - cultural mores
     Psychological effects (2)
•   Stress
•   Strain
•   Increased psychological morbidity
•   Depression levels and rates high
•   Low morale
•   Decreased well-being
•   Less satisfaction with life
•   Decreased quality of life
Rates (%) of depression in CGs
geriatric depression scale > 11






              Total          Female           Male
          (n = 206)       (n = 120)        (n = 86)

   Mittelman M et al. Gerontologist 1995; 35: 792-802
   Physical effects of caring
• Poorer physical health
• Chronic conditions worse, e.g. high
• More prescription medications
• More visits to doctors
• Poorer self-rated health
                Social effects
• Friend and families embarrassed, stay
• Carers abandon hobbies, social activities
• Carers give up work
• Half of carers had seen a person outside
  their home only once a week or less

    1Brodaty   and Hadzi-Pavlovic 1990
        Financial effects
• Loss of earnings by patient, by CG
• Time caregiving
• Medical consultations,
  investigations, drugs, personal care,
  nursing care
• Respite care, residential care
• Welfare payments
    What factors can make a
   difference to quality of life?
• Age
• Optimistic / depressed personality of person
  with dementia and carer
• Past relationship
• How this changes with the illness
• Previous physical and mental illness
• Poor / rich
• Services / zero services
• Large extended family / living alone
• Choice
  What do all carers need?

• Recognising the symptoms
• Effective diagnosis
• Support
Puan SRI Rohana and Tan Sri
   Abdul hamid, Malaysia

 "The golf course was where the signs of
 the disease first showed up. He started
 to break the rules of the game. Friends
 started to avoid playing with him."
Jacob Roy and his father Kor
      Episcopa, India

"We started to notice that his memory
was failing, we were helpless. Over the
ensuing years my mother cared for him.
We took my father to many doctors,
none of them could tell us what was
Ten early symptoms of dementia
1.    Memory loss
2.    Difficulty performing familiar tasks
3.    Problems with language
4.    Disorientation in time and place
5.    Poor or decreased judgement
6.    Problems with keeping track of things
7.    Misplacing things
8.    Changes in mood or behaviour
9.    Change in personality
10.   Loss of initiative
    Molly Blake, Canada

Ellen Agger, mother, says "A diagnosis
of dementia helped both of us put plans
in place for her care. It also prepared
me to better advocate for her when she
was no longer able"
         How the Diagnosis
              is made
• History from patient,close relative(s)/others
• Time of onset and progress of symptoms,
  Family, Medical, Premorbid Personality,
• Examination of Physical and Mental State,
  MMSE, activities of daily living
• Investigations - FBC, Thyroid function, (VDRL),
  (Brain Scan), (Neuropsychological Testing)
• No single diagnostic test
  Key Requirements for Carers (1)

• Early identification of problems
• Comprehensive assessment of needs
  for help, including social and medical
• Medical treatment for any treatable
• Information, advice and counselling
• Continuing support and review, ideally
  from a known and trusted individual
        Key Requirements (2)
• Regular help with domestic and
  personal care tasks
• Regular breaks from caring
• Financial support
• Permanent residential care when it
  becomes necessary
E. Levin, Carers: Problems, Strains & Services, OUP, Oxford 1997
         How to meet these
•   Strong primary care
•   Specialist services
•   Community services
•   A National Alzheimer association
    with local branches
      Primary Care - First
      Professional Contact
• Low threshold to possibility of
• Confident to take history, simple tests
• Management of behavioural problems
• Specialist referral for confirmation
• Refer to Alzheimer associations and
  other support services
• Importance of follow-up of patient and
         Specialist Services
            Essential Features
•   Psychiatrist / neurologist / geriatrician
•   Domiciliary assessment
•   Multidisciplinary team especially nurses
•   Back up of hospital resources
•   Liaison with other medical specialities
•   Liaison with family and primary care
•   Education role
•   Research
        Community Services
•   Flexible to needs
•   Well-informed
•   Good inter-agency communication
•   Reasonable resources
•   Range of services e.g respite,
    residential, home care
     The role of an Alzheimer
•   Give information and advice
•   Run self-help/support groups
•   Provide training courses
•   Advocate on behalf of people with dementia
    and carers
•   Run services
•   Raise public awareness
•   Assist in the development of public policy
•   Encourage research
Mrs Masu Kimura and her
 husband Takeo, Japan

"The Japanese Alzheimer Association
have been a great support to me. This
photo of us was taken on a 2-day trip
organised for carers and their families
by the Kyoto branch of the Association."
  Osmond Moses and his
family, Trinidad and Tobago

“The Alzheimer's Association of
Trinidad and Tobago has been for us a
shining light at the end of a tunnel. I
give thanks to this group"
 Yasmin Aga Khan with her mother
       Rita Hayworth, USA

"Shortly after the diagnosis I was introduced to
  the Alzheimer's Association by some dear
  friends. The knowledge and help I received
  from the Association 'family' during the years
  my mother was ill were invaluable”
    Factors which relieve stress
             on carers
•   Information
•   Support groups
•   Training courses
•   Management of behavioural problems
•   Respite
•   Practical assistance
•   A named, key professional person to
    turn to at all times
•   Questions change as illness progresses
•   Increased carer satisfaction
•   Increased carer knowledge
•   Information = power
•   Limited efficacy in reducing stress

                               (Brodaty, 1992)
Efficacy of support groups* (1)
Good evidence that participation:
• Reduces stress
 (Gonyea 1990)

• Improves psychological functioning
• Increases informal networks
• Facilitates the carer role
 (Toseland et al, 1989)

• Ensures that carers obtain useful,
  meaningful information
 (Jansson W 1998)
Efficacy of support groups* (2)
  May be more beneficial for some carers
  not others, for example those carers:
• with few other social contacts
• in more stressful situations (Pillemer 1996,
• dissatisfied with the carer role (Cuijpers et al
• in a paid job
• whose relative is in a nursing home
                           * Brodaty, Green, Graham 2000
  The Dementia Caregivers’
Program (Brodaty and Gresham 1989)
•   Ten day program for pts. and carers
•   Intensive, comprehensive
•   Psychological counselling
•   Information, education
•   Skills training
•   Involvement of patient
•   Involvement of extended family
•   Follow-up contact and telephone booster
    sessions over one year
     GHQ over time1
                         No CG training

                           Delayed CG training

                          Immediate CG training
                     Differences significant
                        at 6 &12 months

1Brodaty   and Gresham, 1989
         Mittelman study
• Counselling v standard management
• Effective in reducing carer depression
• Effective in delaying admission to
  nursing homes
Long Term Effect of the NYU Spouse-
Caregiver Intervention on Symptoms of
                          Depression (Year 1 to Year 5)

                11                     Usual Care     Treatment




                     52      104        156         208           260

                              Mittelman et al, 1995
 Management of behavioural
• Need for individually tailored
• Important to routinely enquire about
  behaviour eg
• Sleep, repetitive questioning,
• Demonstrated to improve carer mental
  health and the behavioural problems
                           Hinchliffe et al., 1995
   Implications for clinicians
• Effective management and diagnosis
• Essential to work with and listen to
• Effective management of behavioural
• Give information about the Alzheimer
• Long - term follow-up with attention to
  changing needs
ADI - 1984
ADI - 2004
    Alzheimer’s Disease
International is the umbrella
  organisation of national
   Alzheimer associations
      A few facts about ADI
• Founded in 1984 in the US
• Secretariat in London
• Currently 66 national members
• One member per country
• Officially affiliated to WHO
         ADI - Key goals
• To build and strengthen Alzheimer
  associations throughout the world so
  that they are better able to meet the
  needs of people with dementia and their

• To raise world awareness about
  How ADI achieves its goals
• Provides information - web site,
  newsletter, fact sheets
• Runs Alzheimer University courses
• Holds an annual conference and regional
• Co-ordinates World Alzheimer's Day -
  September 21
• Encourages international research
Cochin, India - ADI
 ADI’s 1998 conference changed
the face of dementia care in India
• Since hosting the conference:
• Increase in awareness
• Acceptance of dementia as a distinct
• Growth of ARDSI nationally
• Birth of the ADI 10/66 dementia
  research group
Research - 10/66 project
   Aims of 10/66 Dementia
      Research Group
• Quantify prevalence in regions where it
  has not been studied
• Learn more about causes
• Describe care arrangements
• Quantify impact of providing care
• Encourage development of services and
Ansar Qayyum and his family
"My hero, my dad died last July … I
wish he could be with me even with
Alzheimer's. Now that I am associated
with the Alzheimer's Pakistan I feel as if
I am doing something for the sons
whose fathers suffer from Alzheimer's